Our family's journey with autism and Soma RPM (Rapid Prompting Method) and learning all about our son, Ryan, after unlocking his voice through a letter board after 8 years of silence.

Canine Companions for Independence

I know that many of you have been waiting for this post. I am going to do my best to explain everything and help to answer questions about Canine Companions for Independence. I thought that it might be best to do it in a question/answer format. Here we go.

How long did Ryan have to wait for a skilled companion dog? We began the process in June 2015, right before we moved from California. We filled out the online interest form, returned the application, had a phone interview, then we had to get a reference letter from one of Ryan’s previous therapists (who had suggested the organization for him), then an in-person interview in January 2016. Ryan’s name came up on the waitlist for the November 2016 training and the South Central Region for Canine Companions for Independence (CCI) stated that they had a few dogs that would fit Ryan’s needs.

What will a skilled companion dog do for Ryan? Ryan will be holding a handle attached to the dog’s vest while we are in public. With Ryan focused on his responsibility of holding Freckles’ handle, he is less likely to be distracted or dart off. Some temptations for Ryan are displays with ribbons, lanyards, or gift cards. He also really likes hand sanitizer and we joke that he has “hand sanitizer radar” because he can find a pump any where we go. Holding the handle helps with this. It also can help reduce his anxiety in public places by having the familiarity of his responsibility for holding on to her. Ryan will also have chores for Freckles. He is helping me feed her by helping me measure out the food, carry the bowl, and he spells the command “OK” to instruct Freckles that she can eat now. He is helping with the grooming, taking her on walks (which helps both Freckles and Ryan for exercise), playing fetch with her (improving his skills of throwing a ball which is difficult for Ryan), and helping her with training practice (standing next to me while I command Freckles. Freckles will also help Ryan be more social in the community. So many children are drawn to dogs, and Freckles has been an “icebreaker” for Ryan in being introduced to other kids his age. He is now the cool kid with a dog. This allows Ryan to introduce Freckles and himself and to show kids that he is just like them. Ryan will also have a friend in Freckles. She can be incorporated into our homeschooling day, without taking away from our goals and priorities, only enhancing our day.

What is my role? I am the facilitator or handler for Freckles. I have to be present at all times when we take Freckles out into public because I am the only one certified as her handler. Randy and Grace can learn to help with some basic things in the home (like toileting, going for walks, feeding, etc.) but both Ryan and I need to be present if Freckles comes with us on an outing.

What is the training like for a skilled companion dog? CCI outlines this on their website here.

Why did you choose Canine Companions for Independence? I had first heard of CCI from a friend of mine named Carrie. We met at a Local Autism Moms’ event almost 4 years ago while we both lived in the Bay Area. I met her son’s skilled companion, Tutti, one day when Carrie and I met to hike together. I think the world of Carrie and she spoke about the organization very highly. Since we were renting our home in San Jose, it was not a possibility at that time. As I mentioned earlier, one of Ryan’s therapists, Sarah, also a friend of mine, brought up CCI right before we were moving to Texas. She thought that it would be a great fit for Ryan too. Now, if I am being honest, I have never considered myself a dog person. In fact, my childhood friend Christel and her parents are probably shocked to know that I am a dog owner now as I was a bit scared of their dogs growing up! I probably would not have pursued a skilled companion dog any further, but Ryan brought it up. In one of his first extensive exchanges with another RPMer in Wisconsin at an RPM camp, Ryan stated that he “WANTED MANY PETS.” He also told me later on that he liked dogs but was “LEARY OF CATS.” Since RPM and Ryan’s ability to communicate, I try to only pursue interests (like bike riding) that he has or at least respect the fact that my interests may not be his interests. He was very interested in being a dog owner, so I got the ball rolling. When his name was actually up on the waitlist, although Ryan spelled that he was excited, I could tell that there was more going on. Later on, he spelled that he was NOT SURE. TOO NERVOUS ABOUT HAVING A DOG. It was like it sounded good in his head, but all of a sudden it was going to be real. This is where I kind of pushed him out of his comfort zone because I was all in. I knew that this would be good for him and the family, so I explained to him that we would go to the training and that if it didn’t feel right or wasn’t the right time, that we could reevaluate things. Of course, it turned out great. The last thing that I want to mention when choosing a service dog organization was that I had actually heard of negative things about some people who received service dogs. I had heard about poor training, not enough training, raising thousands of dollars to receive a poorly trained dog, etc. CCI is extremely professional and is free. It is an absolutely amazing organization that wants their recipients and dogs to be successful for life.

What was the 2 week training like? It was intense. And Amazing. And exhausting, both mentally and physically. We were fortunate to have Ryan’s Granny and Mark attend training with us so that they could help with Ryan in case he could not sit for all of the lectures and hands on training. This allowed me to focus on the hands on practice and learning the day to day application and the theory behind everything. This made all of the difference. We had homework each night. We had an extensive written exam and a practical exam with the dogs and the recipients at a local Target. This was stressful! I had Grace quizzing me the night before on the commands and Granny and Mark watched the kids so I could study (Randy was out of town). The next day, after the written test (which I am happy to say that I aced–I missed one question which when they went over it with me, I said the right answer but apparently wrote an incorrect one), Mark and Ryan met up with me at the campus for lunch. Mark brought Ryan after the written exam (so that I could focus on that) and met me in our cabin. We then walked to lunch, leaving Freckles in her crate (it just seemed easier after the test and I hadn’t seen Ryan all morning so I wanted to focus on him). Well we got to lunch and everyone else had brought their dogs. We met another graduate named Archer who had completed the training in September but was going to be graduating with our class. He was very kind to Ryan and asked Ryan where his dog was. I saw Ryan’s demeanor start to change and tried to head it off by taking him outside. We walked to the cabin and he lost it. He was crying and flailing on the ground and just inconsolable. I finally was able to ask him what was wrong and he spelled (essentially yelling at me): FRECKLES SHOULD BE WITH ME ALWAYS!!! I thought that there was more to this and there was. He spelled: I AM TOO NERVOUS THAT I AM GOING TO RUIN THE TEST. Ryan was worried about the in person test at Target. I had been mentioning to him for a few days that he needed to try and be on his best behavior for the test so that I could focus on being sure that Freckles was doing things correctly. I inadvertently added a lot of stress to him. I felt terrible for him. I told him that this was my responsibility and that I felt very confident and that I knew that we could do it as a team. I also told him that we could express his concerns to the trainers. He wanted to do that. We headed back to the lunch room and spoke with Maria and Erin, the trainers for the week. They assured him that it would be okay and that he had nothing to worry about. For our test, we started at the hospital to perform the elevators portion. As we walked though the hospital, Ryan saw hand sanitizer and pointed to it and made some sounds, but he continued to walk and hold onto the handle. When we stopped, I told him how proud of him that I was that he didn’t give in to his impulses. He spelled: HAND SANITIZERS ARE ONE OF MY WORST FEARS. I told him that he was batting a thousand because he was now 1 for 1 against the hand sanitizer. He was proud of that. While we were at training, we also met some of the most incredible people and families that I have ever had the pleasure of meeting. They came from different walks of life and had different stories, but as cliche as it sounds, we were like family by the end of the two weeks. We all had experienced a major life change during those two weeks, we received a new family member in our dogs. That experience bonded us for life. This organization is not just for children with autism. It is for anyone with any type of disability.

What about the Graduation? The graduation was wonderful. There was a graduation brunch before the ceremony. The recipients and their families, donors and volunteers and CCI staff, and the Puppy Raisers (the volunteers who raise the puppies in their homes until they are 18 months old and then turned into CCI for 6 months of training) all were in attendance. We met the Puppy Raisers of Freckles, Don and Dawn, who were awesome. Dawn told us stories of Freckles and gave us a picture book, toys, and collars that belonged to Freckles. We found out that Freckles loves to swim! That is perfect for our family! We were so pleased to know that Freckles was raised in such a loving home. After eating we saw a slide show of the Graduate Dogs as puppies and the Graduation video that was later shown at the Graduation too. Then, Sarah McCracken, the Program Manager at the South Central Campus, opened up the floor to anyone who wanted to say a few words. I was not expecting this. I turned to Ryan and asked him if he wanted to say a few words. He spelled YES. I really didn’t have to ask because if Ryan ever gets the opportunity to speak in front of a large group, he never declines. A few people spoke and then it was Ryan’s turn. I was nervous (of course) but he was cool as a cucumber. Randy held the microphone and I held the board and Ryan began spelling. To be honest, I don’t really recall what he said. It was absolutely amazing and I wish someone had caught it on camera. He got emotional at the end of it (right after spelling the last word) and Randy escorted him outside to compose himself. Grace immediately popped up and said, “Where did Ryan go???!!” I told her that Dad took him out since he was emotional and she said with disappointment in her voice, “Ahh I wanted to tell him how amazing his speech was!!!” Grace is not one to throw a compliment around, so you know that the speech had to be good! You can see the entire graduation here and below is a clip of when Ryan and Freckles were called up on stage.

What does Grace think of Freckles? What will her role be? Grace absolutely loves Freckles and Freckles loves her. Grace is helping me with tasks that Ryan cannot yet do on his own like inspecting Freckles each day from head to toe (examining her eyes, ears, nose, mouth, feeling for lumps or sores, etc. this is the perfect job for Grace’s attention to detail), getting her toothbrush ready with dog toothpaste, and filling up her water bowl as needed. Grace knows that when Freckles is working, that she needs to act like Freckles is invisible. The first few days were a bit hard because Grace wanted to treat Freckles like a pet, but I make sure that she gets plenty of time with Freckles when Ryan is not interested and it is working well.

Grace and Freckles before getting into the car for a family outing.

From Open House at Grace’s School.

Grace and Freckles.

Family Portrait by Grace

How does Ryan feel about Freckles and how long will the bonding take? If I could go back in time and ask someone to video Ryan making his speech at the Graduation Brunch, I would. He summed it up perfectly, but I can’t quite remember what he spelled (probably because I was so nervous). Freckles is extremely friendly and social. She has high energy and seeks the attention and affection of others. I was slightly concerned that since Ryan is not overly affectionate, the bond would take a long time (sometimes it can take a year or longer). What I have found is that Freckles prefers Ryan to anyone else. Even though Grace, Randy, and I display more outward affection to Freckles, she still seeks out Ryan before anyone else when she is on “Release” or just playing. She chases him around, brings him toys and balls (her favorite), and just comes up and tries to lick him and rub up to him. It is absolutely amazing to watch. Truly amazing. Some of the things that Ryan has spelled since the beginning of training:

While at Pet Smart for our second field trip during class, Ryan spelled: TOO HAPPY TO BE A DOG OWNER AT PET SMART.

When I asked him if he wanted to have her crate in his room, he spelled: YES TO HAVING HER IN MY ROOM BECAUSE CALLING IT WE NEED TO BOND. LIKE TO THINK IT IS MEANINGFUL TO SLEEP IN THE SAME ROOM TOGETHER. After two days though, he decided that he wanted privacy, so Freckles has moved to the living room.

After an outing at Walmart, Ryan spelled: EACH TIME WE GO OUT IT IS FEELING MORE COMFORTABLE.

When I asked him if he wanted to go with me to vote, he spelled: MEANINGFUL TO ME TO GO. IT IS TOO IMPORTANT. I then asked him if we should take Freckles (it is still a work in progress to take her out to places but we have really been trying to take her almost everywhere). He spelled: KIND OF BECAUSE WE ARE A TEAM SO YES.

The other day, out of the blue, Ryan spelled: FINDING IT TOO DEARLY AWESOME TO HAVE A DOG. TOO LIKING BEING A DOG OWNER.

And he spelled: MOM I AM ALWAYS GOOD TO HELP PRACTICE COMMANDS.

Another time he spelled: TOO HAPPY TO SPEAK WITH MY DOG IN PUBLIC SOON. (Referring to two upcoming local speaking engagements).

When Ryan and I sat down to have him add to the blog post, here is what he said (which oddly enough, resembles what he spelled at the Graduation Brunch I think!):

CARING TO THANK CCI FOR PROVIDING ME THE OPPORTUNITY TO HAVE A SKILLED COMPANION DOG. TOO MEANINGFUL TO ME TO HAVE FRECKLES. HARD TO PUT INTO WORDS. WILLING TO TOTALLY SAY REALLY KIND OF GOOD TO HAVE A CARING DOG TO “CALLING IT” BE MY BEST FRIEND. MOM, I AM TOO LOVING FRECKLES.

I hope that this long summary helps answer any questions that you might have. Please feel free to let us know if you have any more that we can answer. CCI is fantastic and if you know someone with a disability, please have them look into it. I would be remiss if I didn’t at least mention that this organization truly does provide these dogs free of charge and they rely on the generous donations from members in the community and from the time of caring volunteers. If you want to donate to a worthwhile cause, please check them out.

Ryan picked out the toy at Walmart, spelling: TOO FUN TO GET HER A HAMBURGER TOY. It is now Freckles’ favorite toy.

Thank you for sharing your journey with us. It was an honor to go through this training with you and your Mom. I was so proud of you both and will always remember you as “champions” during the entire process.

Thank you for sharing this story. My adult son Bob has cerebral palsy and received his first CCI assistance dog Efram 10 years ago from NER. Efram retired (he is now our pet) and we received successor dog Hardy last year. These dogs are amazing and I would love to hear more about Ryan & Freckles partnership as it develops further. Here is a link to a tribute video Bob did for Efram upon his retirement:

Sarah, thank you for sharing this amazing video and for sharing Bob and Efram’s story! Ryan and I watched the video together and he spelled with his letter board: TOO GEARING UP TO WRITE A SONG ABOUT FRECKLES. Thanks for inspiring him and be on the look out for a song soon from Ryan!

Hi Sarah & Ryan, My name is Robyn and Freckles was born at my home. My family and I, along with friends, whelped Freckles and raised her for the first eight weeks. Thanks for sharing Ryan’s story. It warmed by heart and reinforces why we support Canine Companions.

Hi, Robyn! I meant to reply to you sooner but it has been a bit busy around here and I got distracted. Thank yo so much for the kind words and for introducing yourself. Our family is so grateful for you and all of the other volunteers that made this possible for Ryan. It is so neat to be able to piece together Freckles’ story before her arrival into our home. Thank you again from the bottom of our hearts!
Love,
Stephanie, Randy, Ryan, and Grace

Thank you so much for Posting your story. I am presently on the CCI list for a hearing dog in the Southeast region as I’m going deaf. The wait is pure torture. I wish they gave people on the waiting list updates along the way. Your story gives me hope and something to really look forward to. Thanks again.